October 2017- Quarterly e-Newsletter

HNCANews Bulletin

October 2017

Help Us, Help You, Help Others:Importance of Clinical Trials

Behind every medicine and intervention are thousands of patients who have volunteered to participate in clinical trials. These individuals, or as I refer to them “heroes”, have helped the development of many breakthroughs in disease prevention and treatment.

It is also important to recognize that “clinical research” is not always devoted to finding the next “blockbuster” drug. Clinical trials also can contribute to invaluable information about the benefits and safety of existing therapies as well as providing doctors and patients with reliable information for choosing between alternative treatments.

Ultimately, because “every medicine or medical device must be fully vetted through closely-monitored and highly-regulated clinical trials to insure their safety and effectiveness,” patients receiving medical care should be encouraged to participate in clinical trials.

Thank you to those individuals who participate in clinical trials, you are the heroes that are helping to develop the new drugs, devices, biologics, and treatments for the future, and improving the care of all patients.

Each day, a patient explains to me that they would not wish their cancer on their worst enemy. Also, they wish that the treatment options were less complicated. We need your help! Please consider volunteering for a clinical trial or a qualitative survey on your cancer journey.

YOU ARE AN EVERY DAY HERO IN YOUR FIGHT – PLEASE CONSIDER BECOMING A HERO FOR SOMEONE ELSE!

to Spread Awareness of Oral, Head and Neck Cancers

Update your Facebook Profile Picture with a HNCA HeadsUp! Frame and join the #HNCAHEADSUP social media campaign to spread awareness of oral, head and neck cancers. It's simple to do and takes very little time!

Designed specifically for head and neck cancer patients, survivors, caregivers and medical staff, the HNCA HeadsUp! Campaign allows individuals to personalize a HeadsUp! message about their own cancer journey or experience and what they wish others to know about head and neck cancer.

HNCA has developed social media artwork frames to personalize and upload on social media sites: Facebook, Twitter, to name a few. Initially, HNCA plans to feature those who wish to participate in several different ways: HNCAHeadsUp! Tuesday and a Head’sUp Honor Wall.

MARK YOUR CALENDAR!

20th Annual Oral Head And Neck Awareness Week®

April 5 - 18, 2018

Early Registration Starts mid-November

Understanding the Impact of Immunotherapy on Head and Neck Cancer

HNCA recently partnered with PeerView to present the Symposium, “Understanding the Impact of Immunotherapy on Head and Neck Cancer: A Look at the Science, Practice, and Future of Multimodal Treatment.” The Symposium, held in San Diego during the American Society for Radiation Oncology Annual Meeting, attracted a full-room capacity of more than 200-plus national as well as international participants, who learned of the latest Immunotherapy science and also earned continued medical education credits.

Treatment options for patients with squamous cell cancer of the head and neck (SCCHN) have expanded with the rapid integration of immunotherapy into clinical practice. Leading expert presenters, at this a CME/CE/CPE-accredited live/on-demand head and neck cancer Satellite Symposium, included: Dr. Ezra Cohen, M.D., UC San Diego Moores Cancer Center; Robert Ferris, M.D., Ph.D., UPMC Hillman Cancer Center and Quynh-Thu Le, M.D., Stanford University Department of Radiation Oncology.

HNCA Board member Dr. Cohen presented on the rapid emergence of immunotherapy from major trials to novel combinations. He explored the science supporting the integration of immune therapy in head and neck cancer patients, including evidence on immune- or targeted-immune combinations.

These advances in treatment could not have been realized without head and neck cancer patients participating in clinical trials. HNCA encourages consideration of clinical trials and we have dedicated an entire section on our website, www.headandneck.org, to understanding clinical trials and locating head and neck clinical trials.

During the Symposium, this video of head and neck cancer survivor Bill McCone was presented. Details of Bill’s successful clinical trials immunotherapy treatment outcomes were discussed. Bill is our featured Cancer Survivor story for this October e-newsletter. You can read more of Bill’s cancer journey through his own words.

We invite you to view the head and neck cancer webcast. Through unique collaborations and advancements in care, HNCA strives to save lives.

American Association for Cancer Research Releases 2017 Cancer Progress Report:

Harnessing Research Discoveries to Save Lives

Federally funded research that provides a deep understanding of cancer is spurring advances against many types of the disease. With a strong bipartisan commitment from Congress to keep investment in biomedical research a national priority, the pace of progress can be accelerated and save more lives from cancer, according to the seventh annual American Association for Cancer Research (AACR) Cancer Progress Report, released in September 2017.

The annual AACR Cancer Progress Report is a cornerstone of the AACR’s efforts to increase public understanding of cancer and the importance of cancer research to improved public health, while also advocating for increased funding for government agencies that fuel progress against cancer, in particular the NIH, NCI, and FDA.

Research: Driving Progress Against Cancer

The AACR Cancer Progress Report 2017 details how individuals working across the spectrum of cancer research from basic to translational to clinical and population research are fueling the development of new ways to prevent, detect, diagnose, and treat cancer. They are providing new hope to cancer patients, survivors, and their family members and friends, including the eight individuals who have shared their personal experiences with cancer in the report.

Progress highlighted in the AACR Cancer Progress Report 2017 includes the following:

According to the latest data, the U.S. cancer death rate declined by 35 percent from 1991 to 2014 for children and by 25 percent for adults, a reduction that translates into 2.1 million cancer deaths avoided.

Between Aug. 1, 2016, and July 31, 2017, the FDA approved nine new anticancer therapeutics and eight previously approved anticancer therapeutics for treating new types of cancer.

Two of the new anticancer therapeutics are in a class of immunotherapeutics called checkpoint inhibitors, revolutionary treatments that are increasing survival and improving quality of life for patients with an increasing number of types of cancer.

Research discoveries continue to advance precision medicine: Seven of the new anticancer therapeutics are molecularly targeted agents.

During this period, the FDA also approved one new optical imaging agent to help visualize gliomas and ensure more complete surgical removal of these brain tumors.

Thanks to public education and policy initiatives, total U.S. adult cigarette consumption, which is the leading cause of lung cancer, decreased by 38.7 percent from 2000 to 2015.

The report emphasizes that even though significant advances have been made, cancer continues to exert an immense personal and economic toll, and that the burden of cancer is shouldered disproportionately by certain segments of the population, including racial and ethnic minorities, patients of lower socioeconomic status, residents in certain geographic locations, and the elderly.

According to the report:

More than 600,920 people in the United States are projected to die from cancer in 2017.

The number of new cases of cancer in the United States is predicted to rise from 1.7 million in 2017 to 2.3 million in 2030.

HPV vaccination could prevent nearly all cases of cervical cancer, as well as many cases of oral and anal cancer, but only 63 percent of girls and less than 50 percent of boys had received at least one dose of HPV vaccine in 2015.

Advances against cancer have not benefited everyone equally and cancer health disparities are some of the most pressing challenges posed by the disease.

It is estimated that the direct medical costs of cancer care in the United States in 2014 were nearly $87.6 billion; this number, which does not include the indirect costs of lost productivity due to cancer-related morbidity and mortality, stands in stark contrast to the budget that the NIH received that same year, which was $30.1 billion.

The report states that the increasing economic and personal burden of cancer underscores the need for more research to develop new approaches to cancer prevention and treatment. It also calls for Congress to:

Continue to support robust, sustained, and predictable growth of the NIH budget by providing an increase of $2 billion for NIH in fiscal year (FY) 2018, for a total funding level of $36.2 billion.

Ensure that funding designated through the 21st Century Cures Act for initiatives and programs, such as the Beau Biden Cancer Moonshot and the FDA Oncology Center of Excellence, is fully appropriated in FY 2018.

Increase the FDA budget in FY 2018 to $2.8 billion, an $80 million increase above its FY 2017 level, to ensure support for regulatory science and to accelerate the pace of development of medical products that are safe and effective.

Negotiate a bipartisan budget deal to raise the discretionary budget caps for FY 2018 and beyond, which would allow our nation’s policy makers to continue to invest in priority areas, such as biomedical research funded by the NIH.

“This is an incredibly exciting time for the cancer community,” said Margaret Foti, PhD, MD (hc), chief executive officer of the AACR. “Research has fueled advances across the continuum of cancer care that are saving lives around the world and we have the scientific knowledge and capability to deliver more lifesaving progress in the future."

Pointers from the Pros:

Free 1 Credit CME to Master Your HPV Vaccine Recommendation

What are the nation’s experts saying to their patients about HPV vaccination? Three providers—a pediatrician, an OB-GYN, and a head and neck surgeon—outline the importance of vaccinating 11- and 12-year-olds against HPV cancers in a newly released e-learning module.

“Increasing Adolescent Immunization Coverage” is a 40-minute e-learning module for pediatric and primary care provider teams, created by members of the National HPV Vaccination Roundtable. This module provides information, guidance, and tools for quality improvement efforts to increase HPV vaccination by improving providers’ ability to:

Describe the importance of the HPV vaccine

Implement the “same way, same day” approach to HPV vaccination for 11- and 12-year-olds

Answer parents’ questions accurately and succinctly

Introduce new practice tools to support HPV vaccination in the pediatric health care setting

RNs/NPs, physicians, physician’s assistants, and pharmacists can earn a free hour/credit by viewing the CME modulehere. Non-credit seeking audiences can view the video here. Help us promote this widely with your networks and reach providers in all states.

Recipe Card 04:

George Chajewski's Turkey Gumbo

Yield: 4 servings.

Ingredients:

2 tbsp butter

1/2 lb okra, fresh cut in 1 inch pieces

1 c celery, diced

1 sweet onion, diced

1 green pepper, diced

2 cloves garlic, minced

18 oz can tomato paste

4 vine ripened tomatoes, peeled and diced

2 c chicken stock

2 c turkey, cooked, diced

1/2 tsp gumbo file powder

Cooking steps:

Melt butter in non-stick stock pot.

Add okra and sauté for 5 minutes.

Remove okra pieces to a bowl.

Add celery, onion, green pepper and garlic to the pot.

Cook over medium heat until onion is transparent.

Add tomato paste, tomatoes, chicken stock, okra mixture and turkey.

Cook over low heat for 10 minutes or until turkey is hot.

Add gumbo ﬁle powder.

Stir to blend.

Spoon over cooked rice in soup bowls.

One of the many recipes by dearly beloved HNCA volunteer, George Chajewski. As an oral cancer survivor, he wanted to share his recipes and wrote a cookbook for head and neck cancer survivors in 2008. George recently passed away on March 4, 2017 and will forever be remembered as a caring man who treated everyone like family and had a zest for life.

Bill McCone: Surviving Head and Neck Cancer

Thanks to Pembrolizumab

In September 2014, I was told that my head and neck cancer had spread to my lungs and that with standard treatment I had about a year to live. I was also offered the opportunity to enroll in a clinical trial testing a drug called pembrolizumab (Keytruda). I took the opportunity, and after just 24 weeks, there was no evidence of cancer in my body. I was floored, but I’m living life to the full, camping, walking, and traveling with my wife.

My journey with cancer began about a week before Thanksgiving in 2013. I tipped my head back to shave one morning and noticed I had a small lump in my neck. I kept feeling it for several days so my wife told me to go and get it checked out.

My family doctor sent me to an ear, nose, and throat (ENT) specialist at the local hospital who ordered a CT scan and a biopsy. The tests showed that the lump was a lymph node in my neck that was enlarged because of squamous cell carcinoma, although they didn’t show the source of the cancer.

I was devastated. It felt as though my world had stopped and that everything else was just going on around me.

At that point, I wanted a second opinion at a specialized cancer center, so I went to Fox Chase Cancer Center in Philadelphia.

There they found that the primary cancer was in my left tonsil. Tests on a biopsy showed that the cancer was caused by HPV [human papillomavirus]. It was a total shock to me. I knew that my two daughters had received the HPV vaccine growing up, but my son had not. Right away, we got him vaccinated. I know that not everyone is having their children vaccinated, but I would strongly recommend vaccination over what I went through. I wouldn’t wish my experience on anyone.

My initial treatment was a six-week course of radiation. I also received weekly infusions of cetuximab (Erbitux). The cetuximab made me break out in itchy pimples, but the side effects of the radiotherapy were far worse. It caused blisters in my mouth and after about four treatments I couldn’t eat anything. I lost 25 pounds in weight, dropping below 170 pounds, and I needed to drink seven Boosts a day for three-and-a-half months to maintain enough weight so as not to need a feeding tube. It was grueling.

My first CT scan after the initial treatment was in June 2014. They told me there was a 6-millimeter spot in one of my lungs but that I shouldn’t worry about it because it could be anything. Three months later, the next CT scan showed that the spot had doubled in size and other spots were now visible.

The cancer had metastasized to my lung.

That was when the doctor told me that if I continued with standard treatment I had about a year to live. My wife and I looked at each other and our heads drooped. But a few minutes later, the doctor started talking about clinical trials. She told us that one of them was an immunotherapy trial and there were just two spots left. After thinking about it for a day, I enrolled.

My first infusion of pembrolizumab was in October 2014. I received it every three weeks for two years; I’ve been off it since September 2016. The only issue I’ve had was I developed hypothyroidism, but I take thyroid medication and it causes me no problems.

I had my first scan after starting pembrolizumab just before Christmas of 2014. It showed that the tumors had shrunk by 90 percent. I was amazed. Two scans later, there was no evidence of disease. Every scan since, including my last one in May 2017, has shown the same thing.

Hopefully, things stay this way and I can live my life. My wife and I have been going through a book called, “1000 Places You Need to Visit Before You Die,” which she gave me before my diagnosis. We’ve been on an Alaskan cruise, and visited Yellowstone National Park, the Calgary stampede, and Nashville. We can’t wait for our next trip.

Maintaining funding for research is very important to me. The initial treatment I was on did not help me, but a new immunotherapy did. It is miraculous what it did, so let’s keep the funding going and get this thing knocked out of the way.

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